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I haven't posted here in a while, but I was wondering if anyone knows about any upcoming treatments that actually re-myelinate rather than slow down progression. What are the names of these drugs and how long will it be before they are on the market (rough guess)

Lots of other research is being funded and stem cell approaches to myelin repair are likely to be trialled in say five years time (my guess).

My guess is it will be some time and the key is to prevent the myelin being destroyed in the first place. More importantly, is the need to prevent axonal loss which leads to disability. I am hopeful that in the nearer future 2-3 years, this might be a real possibility. Fingers crossed.

Another site you might want to visit is www.myleinrepair.org. This is a relatively new private foundation whose goal is to find a solution in five years. They have been researching for about six months and my understanding is they are in the process of filing for their 1st patent.

Professor Alan Thompson at the UK MS Society conference last year said:

'Now, that’s all I’m saying about suppressing or modulating or interfering with inflammation with the immune system. I really want to come back to the key point that was made by Richard and that I made earlier on, that if we’re going to make a real difference to this condition we have got to have a much broader approach to it. And we’ve got to think about protecting the axon and we’ve got to think about encouraging repair. I think effecting or influencing the immune system has a limited impact and may only have a limited impact, even if you start early. And basically on this slide just listing some of the things that happen that could damage the axon. And just listing, nitric oxide you heard about earlier, some of the protease and some of the cytokines, it doesn’t really matter, it’s a complicated process'.

But - the use of Campath on early RR sufferers has apparenlty had good benefits - no (or very few) attacks and improvement in disability for most (see LabRat's entry in Campath section). Of course it will 5-7 years before an assessment can be made as to whether it has stopped progression.

As usual with ms nothing is ever straightforward and the comapnies will not give up on drugs which effect the immune system (DMD) as that's where the money is. But can some researcher once and for all work out whether this is a disease where de-myelinisation is the problem or not.

All I'm going to say is to remember that progressive MS which moves the fastest to permanent disability does not involve inflammation, and they have shown over and over again that it is axonal damage (with or without demyelination) that causes the permanent disability. Sometimes axons suffer damage without any demyelination happening at all. And sometimes you have demyelination, but if the axons are adequately "fed" (with growth factors, etc.) or protected, they continue to do their job.

I think we have our answer from all of the research, it is just that they have no treatments at all yet for "direct" axonal protection or regeneration.

I do believe there are some "minor" patterns of MS (which fall under the current classifications of RRMS or benign MS) that involve inflammation and/or demyelination, but that is not true of EVERY pattern of MS.

When we talk about drug companies sticking with immunomodulation drugs because that is where they can make money, it is more than just profits. It is expenses too. Remember they have a staff of researchers to pay of whom a larger percentage or even the majority are probably immunologists or have banked their careers on immunological research. Turning them into a staff looking at neurodegeneration as the prime concern requires time and more cost. Probably have to hire new researchers with the right direction and let attrition reduce the old immunology staff.

I guess I have to get my two cents worth in. I'm not going to insert or paste all the Quotes finn posted in this thread, read those first please.

They all make sense to me!

My simplistic opinion, if it is worth anything is this:

Consider this simple analogy: If you get hit in the head with a hammer, the swelling/lump isn't there immediately. If you twist your ankle the swelling (inflammation) takes even longer to appear. If someone suffers a heart attack caused by an emboli, there is a window of 4-6 hours (don't remember exactly) in which clot busting drugs may be administered to open the vessel and restore critical nourishment thereby limiting permanent damage to surrounding tissue(collateral damage).

My point???

Seems to me researchers are too focused, and concentrating on the response, not the actual problem here!
Aren't the available meds focused on a bodies response, not a cause?

Why can't inflammation be a normal reactive response/result rather than a cause? So what is the cause....back up on the timeline of a legion. We're too late, we're all looking at results on causes

secondly, axonal damage, once again, is a result, not the cause.

Inflammation and axonal death are results. Many meds/treatments I'm aware of are limiting "collateral damage"

Back to my hammer analogy: Ice and meds will limit swelling and pain (inflammation if you will). The underlying cause is still there - the damn hammer. You were to late to prevent the cause.....

This fits into a theory I've been hashing around. I've shared some with OddDuck in PM's over the last week or so.

This is what I like about this site - a bunch of people with a disease who are setting out different views and having a debate / discussion. We may not be able to crack the issues ourselves but most of us have more understanding of the various issues than your bog standard neuro.

Protecting the axons / nerve fibres has to be the key, and for those who have lost many already - to regenerate them. Given that the drugs companies are making the heavy investment in the immune side - we need a champion to invest in the neuro protection side. Professor Thompson at the conference I mentioned earlier said that there were exisitng drugs which might offer neuro-protective qualities but that drugs companies weren't interested in funding trials as there was little return for them. Surely this is where the national societies eg US, UK, France, Germany should be getting together and jointly funding fast track projects / trials.

We also need to identify a wealthy benefactor - anyone friends with Bill Gates. J K Rowling's (Harry Potter) mother died very young from MS. She's apparenty worth $500m - she may well like to contribute to the cause.

Neuro-protection must be the aim to address this disease in whatever guise it comes RR, SP, PP. I'm getting hopeful for the future in this area - and I'm a naturally pessimistic sort of guy!

Bromley

PS OddDuck - I think you are right about the different subsets of ms. My mother in law knows a woman who has had ms for 27 years. Every couple of years she has an attack and goes on steroids for ten days. She has no disability at all. I heard a similar story from someone who's brother has had ms for 25 years+. My MS nurse says that she thinks that PP is a different disease altogether.

Lets take that one further, within those subsets there are people..millions more subsets. Another analogy, lets say you can't take naproxin sodium(Aleve in U.S.), or it upsets your stomach. I can but it gives me heartburn believe it or not. Personally I use tylenol more often seem to work better for me.

Lets say Betaseron did nothing for you, but is a good therapy for me.
OddDuck seems to be doing very well on her largely "natural" approach.

Aren't these subsets also??

I don't know about you but to me, that is encouraging. Look on the positive side huh!!

I once read something a known psychologist (I think) said in an article I read.

Professor Thompson at the conference I mentioned earlier said that there were exisitng drugs which might offer neuro-protective qualities but that drugs companies weren't interested in funding trials as there was little return for them.

Yeah, don't I know! It's good, though, to hear somebody else say it.

treez: True. Most everything regarding treatment for MS, no matter if it is for axonal damage or demyelination, etc., is still hitting it later in the process. The problem is, it "appears" (at least to me), that there are or could be several different "causes" or combinations of causes that result in MS pathogenesis. That is the difficulty. And what if part of it is a result of toxins or some other type of environmental influences over which we have little to no control of?

And why then, do only SOME of us end up with MS, and not everybody?

(Just playing devil's advocate here. )

Deb

EDIT: We're all posting at the same time, so I want to just say that I agree (trying natural things as much as possible). Remember, though, I am also on two different medications. The purely natural things I was doing eventually wasn't enough, but it certainly helps!

Oh.........and yes, I'd say there are several subsets. If MS WAS just one type of "disease", then why IS everybody with MS so different?

I mean.........take diabetes for example. You have type 1 and type 2 diabetes, but everybody who has either type of diabetes has the same thing going wrong with their body. See what I mean?

There are many things that can affect the body's insulin production. The end result is the same though.

But the cause is still different. We don't have anything to cure diabetes because once again..we're to late. We are treating the result of an underlying cause...........which will be different in many individuals. Some are born with it. Pregnancy causes it in some women. Obesity causes it in some, etc,etc.

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